My husband is currently on the Flair trial, started June 2016.
One month into the trial he got fungal pneumonia, was hospitalised for ten days and very ill. Ibrutanib was suspended for the maximum time, four weeks, that the trial permitted then he was put on a third dose of it ( one tablet) until August 2017. This was because the Fluconazole he had to be on because of the fungal infection was a high dose until then and had the effect of making the ibrutanib stronger. He was then put on a prophylactic dose and ibrutanib increased to 3 tablets, which was reduced to 2 after a month as he had a bad stomach on the 3. Things went well and blood levels all good( still are) until a couple of months later when he got a severe rash and blood spots which actually bleed.
The discomfort and itching became so bad that the hospital have stopped the Ibrutanib altogether for two weeks to see if it makes any difference. That was over a week ago and the skin is just as bad. He can't be off Ibrutanib for longer than 27 days or he'll be taken off the trial.
Has anyone else experienced this? He'd had no problem with Ibrutanib before this. I'm thinking that maybe even 2 tablets is too much for him, whether they will let him continue on only 1 tablet I don't know.
Also can anyone recommend a cream for the skin condition to give him relief? We've tried various ones and nothing seems to help completely.
Obviously the last thing we want is for him to come off the trial. His blood results have been really good and prior to starting the trial he was having to have blood transfusions every two weeks.
I would really appreciate contributions from anyone who has experienced any of this.
Thanks everybody.
Written by
Poohey
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I have had a rash on my legs, arms and torso (mostly small light red dots connected in a web pattern –most days no itch or discomfort) since 2006 before my CLL diagnosis in 2008.
Each of the 4 times I was treated for my CLL it got visibly worse, but Ibrutinib made it much worse- angry red & itchy.
When I paused Ibrutinib my skin was back to normal (my own normal light red dots) in 2 weeks, and restarting Ibrutinib after 4 weeks made it angry red quickly.
Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides.
The common result from expert pathologists that ran flow cytometry on the biopsy, was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.
My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).
In winter - dry cold weather, if it becomes itchy and bothersome, I use Triamcinolone Acetonide (prescription steroid cream) for 2-3 days then switch to a good moisturizer like CeraVe until the rash is well controlled.
The most recent diagnosis by a research pathologist eliminated CTCL and its cousins, but attributed it to T-cell Dyscrasia.
SNIP: "Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed".
My own experience is that skin rashes and irritation has occurred starting just before I was diagnosed in 2008, and any time I got treatment for my CLL, it got worse. But Ibrutinib/Imbruvica really ramped it up to painful levels.
So perhaps your skin doesn't like CLL but Imbruvica really pisses it off.
I suggest you have a good cancer oriented dermatologist do a full body inspection of your skin every 6 months (we get skin cancer at 5x to 8x more often than non-CLL people- and the only way to detect it early is get an expert examination) and helping your treat your sores will be part of that care.
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